Archive for the ‘Treatment’ Category

Amy Hilfiger & Lyme

Published on Oct 31, 2017

Ally Hilfiger shares her experiences at Focus on Lyme 2017
LymeDisease.org

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Ally Hilfiger, daughter of famous fashion designer Tommy Hilfiger, has struggled with Lyme disease since childhood. We included an excerpt of her book “Bite Me: How Lyme Disease Stole My Childhood, Made Me Crazy, and Almost Killed Me” in our Fall 2016 Lyme Times issue. To take a look, click here: https://www.lymedisease.org/members/l…

 

Connecting the Dots of Yolanda’s Lyme Experience

https://www.lymedisease.org/touchedbylyme-yolanda-hadid-book/  by Dorothy Kupcha

TOUCHED BY LYME: Connecting the dots of Yolanda’s Lyme experience

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I first learned about the Lyme disease experiences of Yolanda Hadid (then known as Yolanda Foster) via Twitter.

At that point, Yolanda was a cast member of the “Real Housewives of Beverly Hills” TV show, a former high fashion model, wife of millionaire music mogul David Foster, and mother to three children who would themselves go on to high profile careers in modeling.

I admit, her story hooked me right away and I immediately started following her Twitter posts. Her tweets offered a trail of tantalizing bread crumbs. They alluded to hyperbaric oxygen, stem cells, hyperthermia treatments and various cleanses and detoxification protocols. Yet, details were non-existent. She never gave the reader any solid information about her symptoms, nor her wide and varied treatment protocols.

Eventually, she would write blogs for the Bravo website, in connection with the Housewives show. These occasionally mentioned Lyme disease. There were media interviews that spoke of some of her difficulties, and a brilliant speech at the 2013 Time for Lyme Gala in Connecticut.

But mostly, her story dribbled out as a string of cryptic comments on social media. They typically raised more questions than they answered.

Now, Yolanda has connected the dots for us in her book, “Believe Me: My Battle with the Invisible Disability of Lyme Disease.” (St. Martin’s Press, 2017)

It’s a compelling read. Lyme patients will identify with many of its elements: troubling physical symptoms that can’t be explained; a long, traumatic search for an accurate diagnosis, with plenty of missteps by top medical doctors; the difficulties of treatments, both traditional and alternative.

Not everything is something the rest of us might relate to, however. Before she gets sick, Yolanda and David Foster inhabit a glamorous, jet-setting realm, which includes her involvement with the “Real Housewives” TV show.

However, all that changes as her health fails and she must marshal every ounce of inner strength she has to save her life and her sanity. Yolanda falls further and further away from the dazzling world of the entertainment industry, and eventually her marriage collapses as well.

Her willingness to keep searching for answers is a major theme of “Believe Me.” By this time, two of her children are also being treated for Lyme disease. She fights for their lives as well as her own. And in the midst of it, she loses her dear friend Ellie to the ravages of ALS—a severe emotional blow.

Through it all, Yolanda perseveres. She crisscrosses the globe to try out an astonishing array of alternative and ancillary treatments. She has metal-based crowns removed from her teeth and toxin-leaking implants removed from her breasts. She pursues the mystery of intestinal parasites, eventually expelling some gnarly looking rope worms. (Color photos included!)

I don’t view “Believe me” as a road map for Lyme disease treatment. Rather, it’s an inspiring description of her personal journey. Despite many twists and turns, it ultimately leads her to a good place.

I salute Yolanda for the grace, courage, and fortitude with which she endured an incredibly difficult stage of her life. And I thank her for so generously sharing what she has learned along the way.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org

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**Comment**

I have not read Hadid’s book yet but am thankful the parasite/worm issue was broached as many Lyme/MSIDS patients improve after taking anthelmintics such as Albenza, Ivermectin, and pin worm medication. Microbiologist Tom Greer shows that Burgdorferi and miyamotoi are associated with amyloid plaques in Alzheimer’s brainsBorrelia found in Lewy Body Dementia, nematodes (worms) found in Alzheimer’s brains, and Borrelia found in five deadly brain tumors (Glioblastoma multiform).  https://madisonarealymesupportgroup.com/2016/08/09/dr-paul-duray-research-fellowship-foundation-some-great-research-being-done-on-lyme-disease/

Pathologist Alan McDonald has found three strains of borrelia living in parasitic nematode worms, worm eggs, or larvae in the brain tissue of 19 autopsies.
MacDonald states that both worms and borrelia can cause devastating brain damage and that “while patients are wrongly declared free of Lyme and other tick-borne infections, in reality, too often they contract serious neurodegenerative diseases which can kill them.”  

Lyme discoverer, Willy Burgdorfer, wrote of finding nematodes in tick guts way back in 1984 and in 2014 University of New Haven researcher, Eva Sapi, found 22% of nymphs and 30% of adult Ixodes ticks carried nematodes.  https://madisonarealymesupportgroup.com/2016/06/03/borrelia-hiding-in-worms-causing-chronic-brain-diseases/  

Parasite treatment:  https://madisonarealymesupportgroup.com/2017/10/03/removing-parasites-to-fix-lyme-chronic-illnesses-dr-jay-davidson/

After reading about symbionts found in ticks and worms,  https://madisonarealymesupportgroup.com/2017/05/01/co-infection-of-ticks-the-rule-rather-than-the-exception/, I am concerned the use of Wolbachia (a symbiont) as a biocontrol as it could cause widespread inflammation in Lyme/MSIDS patients:  https://madisonarealymesupportgroup.com/2017/07/10/wolbachia-the-next-frankenstein/  Dogs treated for heart worm (D. immitis) have trouble due to the heart worm medication causing Wolbachia to be released into the blood and tissues causing severe Inflammation in pulmonary artery endothelium which may form thrombi and interstitial inflammation. Wolbachia also activates pro inflammatory cytokines.

Clinical Trial Shows Most Kids With Autism Are Not Born With it

http://soundchoice.org/wp-content/uploads/Dawson_2017_Autism_autoUCB.pdf  Stem Cells Translational Medicine

GERALDINE DAWSON, JESSICA M. SUN, KATHERINE S. DAVLANTIS, MICHAEL MURIAS, LAUREN FRANZ, JESSE TROY,  RYAN SIMMONS, MAURA SABATOS-DEVITO, REBECCA DURHAM, JOANNE KURTZBERG

Autologous Cord Blood Infusions Are Safe and Feasible in Young Children with Autism Spectrum Disorder: Results of a Single-Center Phase I Open-Label Trial

ABSTRACT

Despite advances in early diagnosis and behavioral therapies, more effective treatments for children with autism spectrum disorder (ASD) are needed. We hypothesized that umbilical cord blood derived cell therapies may have potential in alleviating ASD symptoms by modulating inflammatory processes in the brain. Accordingly, we conducted a phase I, open-label trial to assess the safety and feasibility of a single intravenous infusion of autologous umbilical cord blood, as well as sensitivity to change in several ASD assessment tools, to determine suitable endpoints for future trials.

Twenty-five children, median age 4.6 years (range 2.26–5.97), with a confirmed diagnosis of ASD and a qualified banked autologous umbilical cord blood unit, were enrolled. Children were evaluated with a battery of behavioral and functional tests immediately prior to cord blood infusion (baseline) and 6 and 12 months later. Assessment of adverse events across the 12-month period indicated that the treatment was safe and well tolerated.

Significant improvements in children’s behavior were observed on parent-report measures of social communication skills and autism symptoms, clinician ratings of overall autism symptom severity and degree of improvement, standardized measures of expressive vocabulary, and objective eye-tracking measures of children’s attention to social stimuli, indicating that these measures may be useful endpoints in future studies. Behavioral improvements were observed during the first 6 months after infusion and were greater in children with higher baseline nonverbal intelligence quotients. These data will serve as the basis for future studies to determine the efficacy of umbilical cord blood infusions in children with ASD.

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**Comment**

**UPDATE July, 2022**

Roughly 1 in 30 children and adolescents ages 3-17 were diagnosed with an autism spectrum disorder in 2020, according to a JAMA Pediatrics research letter, which referenced a new study showing a 53% increase in ASD in young Americans since 2017.

According to the documentary Trace Amounts as of 2014, 1 in 68 children have Autism. That’s 1 Million US children.

http://soundchoice.org/wp-content/uploads/notbornwithit-2.pdf According to Sound Choice Pharmaceutical Institute, the Duke study is remarkable in that 60-70% or more of children with Autism have de novo gene mutations (not found in either parent) that must have occurred after birth according to the results, not in the egg, sperm or early utero development as previously, and erroneously assumed.

This new finding reveals research should now be geared to finding out what environmental damage after birth leads to these mutations and/or what pathogens are acting as triggers.

Autism like Lyme/MSIDS is an epidemic and according to one Wisconsin LLMD, 80% of his Autistic patients are also infected with Lyme/MSIDS.

For more:  https://madisonarealymesupportgroup.com/2017/09/19/autism-aluminum-adjuvant-link-corroborated/

https://madisonarealymesupportgroup.com/2017/09/21/aluminum-flawed-assumptions-fueling-autoimmune-disease-and-lyme/

https://madisonarealymesupportgroup.com/2016/12/08/mercury-and-autism/

https://madisonarealymesupportgroup.com/2017/03/27/vaccines-revealed-8-watch-trace-amounts-for-free-until-9pm-tonight/  I highlight the documentary Trace Amounts

Lyme Wars Part 1 – Julia’s Story

https://www.nbcnewyork.com/on-air/as-seen-on/Debate-Over-Chronic-Lyme-Disease-Affects-Brooklyn-Teen_New-York-452584583.html Oct. 23, 2017 (News Video in link)

The Lyme Wars Part 1

Julia’s Story:  Teen’s Health Affected in Fight Over Chronic Lyme

The life of a Brooklyn teenager who once danced and played sports changed in nearly an instant. Now she takes more than 70 pills a day and is unable to walk as her doctor tries to treat what he calls chronic Lyme, a controversial diagnosis linked to Lyme disease-carrying ticks. Julia’s story is the first in our five-part investigative series. Stefan Holt reports.

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A 2015 report reveals Emblem Health stopped paying for Julia’s treatment which was giving her feeling back in her feet:  http://www.nbcnewyork.com/investigations/Lyme-Disease-Insurance-Fight-Investigation-360476931.html  Insurance companies have been hiding behind the outdated and unscientific CDC guidelines for decades, denying coverage for Lyme patients.  Since the testing misses over half of all cases and since the antiquated 2006 guidelines recommend 21 days of doxycycline for everyone, regardless of persisting symptoms, insurance companies get away with it.  One key point here is that treatment was working for Julia.  

Dr. Wormser and others who affiliate with the IDSA guidelines theorize & believe there should be antibodies present – but herein lies the problem which is two-fold; 1) the CDC has set up arbitrary levels of needed antibody presence and taken out key bands of the test (band 31 OspA & band 34 OspB) that are specific to infection due to their patent on the Lyme vaccine which also uses those bands, and while many patients do have antibodies they don’t have enough, and 2) it’s been proven some folks never mount an appropriate immune response to reveal these antibodies.  It’s a Catch-22 with multitudes not meeting the Lyme Cabal’s subjective criteria.

More on testing:  https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/

For more on the Lyme Wars:  https://madisonarealymesupportgroup.com/2017/10/24/the-lyme-wars-faces-of-the-health-crisis-a-digital-documentary/

 

 

The Lyme Wars: Faces of the Health Crisis – a Digital Documentary

http://www.nbcnewyork.com/on-air/as-seen-on/LYME-WARS-1508783640861_New-York-452543463.html  Published Oct. 23, 2017 (Click on link for video)

The Lyme Wars

This powerful segment gives three Lyme/MSIDS patient stories.

Julia, is still wheelchair bound after presenting with the tell-tale bullseye rash.  Her arms and legs went numb at school.  She’s seen 60-70 specialists but tested negative for Lyme.  Her greatest advocate is her dad who became an internet researcher to figure it out.

Kyra, didn’t have the normally thought of symptoms – just horrible anxiety, depression, and hopelessness.  Her doctor knows Lyme is the great imitator and suspected it despite a negative test.  She tested positive for Ehrlichia, which implies contact with a tick.  Due to the Lyme/MSIDS diagnosis Kyra went from blaming herself to understanding she now had something she could fight.  After doxycycline they chose IV Rocephin – and Kyra became herself again.  “The feeling of actually starting to recognize pieces of what I was before was such an amazing feeling.”

David, felt pretty good after 30 days of antibiotics but after researching on the internet and understanding the probability of coinfection involvement and some persisting symptoms, he wanted a Lyme literate doctor (LLMD) to appraise his case.  He handles his symptoms by avoiding carbs, alcohol, and doing homeopathy.  David says there might be 7 deer on his lawn on any given day, so he bought the Japanese Barberry plant to thwart them; however, research has shown the plants harbor ticks and mice.  David states you have to be your own advocate, that every case presents differently, and that you have to do your own research but not drive yourself crazy, remembering that someday the sun is going to rise and you are going to feel better.

For more facts and info:  NBCNEWYORK.CO/LYME

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**Comment**

Excellent, excellent story with wonderful information.  If you do a tally, two of the three tested negative (David didn’t say) – which is very common.  Patients so desperately want that positive test but they must understand testing for tick borne illness (any of the pathogens) misses half of all cases.  There is a small window in which the test even works and even then some people never mount an appropriate immune response.

More on testinghttps://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/

Finally, after 40 years of suffering, even the CDC is stating to treat if TBI’s are suspected:  https://madisonarealymesupportgroup.com/2017/07/12/start-treatment-if-tbis-are-suspected/

Please know an EM rash IS LYME DISEASE.  No testing required!  According to ILADS you need medication for 3-4 weeks and NOW!  https://madisonarealymesupportgroup.com/2017/03/24/one-pill-of-doxy-only-reduces-prevalence-of-rash-not-lyme-disease/

Dr. Elena Frid has excellent advice on things for parents to look for: https://madisonarealymesupportgroup.com/2017/09/19/three-things-for-parents-to-watch-for-regarding-tbis/

When Lyme isn’t caught early:  https://madisonarealymesupportgroup.com/2017/09/05/when-lyme-isnt-caught-early/

Kyra‘s sudden mental changes are key symptoms that need to be acknowledged.  If your child suddenly has drastic mood changes, please consider TBI’s as well as PANDAS/PANS:  https://madisonarealymesupportgroup.com/2017/10/09/today-is-panspandas-awareness-day/

Recently, the CDC came out with a damning report based on 5 patients who had adverse outcomes after IV treatment.  Please understand that thousands of Lyme/MSIDS patients’ lives have been saved using IV treatment – Kyra’s included.  For more:  https://madisonarealymesupportgroup.com/2017/09/08/another-lyme-patient-benefits-from-iv-treatment/  What’s important to remember is many of these pathogens can infect the brain, requiring drugs that cross the blood, brain, barrier.  You can throw doxy like napalm until you are blue in the face but it will not eradicate organisms in some.  There is a concern of doxy throwing the spirochete into a non cell wall form to lurk until later – perhaps causing or exacerbating Alzheimer’s and dementia:  https://madisonarealymesupportgroup.com/2017/06/10/the-coming-pandemic-of-lyme-dementia/

More on psychiatric Lyme:  https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/

https://madisonarealymesupportgroup.com/2017/10/03/treat-the-infection-psychiatric-symptoms-get-better/

David rightly warns of coinfections as research has shown Lyme rarely comes alone:  https://madisonarealymesupportgroup.com/2017/07/01/one-tick-bite-could-put-you-at-risk-for-at-least-6-different-diseases/

Japanese Barberry:  https://madisonarealymesupportgroup.com/2015/09/30/barberry-friend-or-foe/